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Night Elf

cc - Autism a gift?

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My friend got onto me for lamenting my ds's autism and told me that God chose to make my son special for reasons only He knows. Am I truly not seeing this as true? I see his autism as an affliction a mess of obstacles that complicate his life. I often wish he were like his peers and able to do the things that normal peers do. I'm so worried about his present and future. I pray for him every day and try to lay my worries at the feet of Jesus but I'm having a hard time letting go of these concerns. What do others of special needs children do? What else can I do to feel good about my ds's life and how can I help him without being the hovering parent? He's 22 and just started a 2-year degree at a technical college. I have doubts he'll finish based on prior experience with college. I'm just a mess of nerves where he's concerned.

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Well, on the one hand, I do believe one must play the hand that was dealt, but on the other, I’m not a fan of the God-has-His-reasons theology. That particular nugget of theology messed me up in the head for years after my baby girl died at birth. I wasn’t able to come to a place of acceptance of that tragic event until I got rid of the -God-has-His-reasons idea and just accepted the Crappy-Stuff-Happens philosophy, which is putting it nicely. I find it much easier to just deal with what is, instead of trying to find some reason for it. 

Your son may continue to need more support from you than a typical 22yo; I don’t put that in the same category as hovering. (Of course, I can’t see what you actually do IRL, so it may be you need to back off some; I can’t know from here.) 

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I firmly believe this is something people tell themselves to have peace.  If it's for a reason, then there must be some great good to come out of it.

I am not saying that there cannot be something wonderful, but that I don't believe that's true for every situation and it's not a root of every situation.  Especially biologic concerns and when people use that saying to describe absolute horrific events.  Mass murders are not part of God's plan.  The children in Newtown were not some modern day sacrifice to a deity.

It is perfectly okay for you to be worried and wondering over your son's future.  The fact is, there may be hardship ahead and it's wise to think over all those possibilities.  Find peace with the support of your faith, but if you need to reason things out then there is not a loving person who will say that is wrong.

Edited by HomeAgain
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I don’t believe this is how God works.  Bad things happen because the world is fallen; there’s neurological damage because of that.  Autism may very well have some evolutionary, biologic function that it no longer serves, so maybe in that sense it’s a gift.

There are good things to come out of my son’s autism.  But he struggles so much in day to day things—I don’t think it’s a gift.

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I also believe this is something people tell themselves to bring peace and tell others to be helpful.  Sometimes people are clumsy and don't realize that what they are saying isn't helpful at all.  

This is my belief only and I don't mean to start a theological debate: God makes it very clear through the Bible that there will be troubles in the world. Some are big, some are small; some are personal and some have huge implications.  I also believe that this life is not the end and something better is coming. 

One good thing that I have seen come out of disabilities is growth in family members and others who are involved with the disabled person:  compassion, empathy, the understanding that we all need to care for others.  That  doesn't help in the day-to-day struggles, I know.  It doesn't help when people are clumsy or well-meaning but say hurtful things.

Hugs to you, Beth.  I'm praying for you and your son today.  

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I think "your friend" falls under the category of "Job's comforters" if they'd lived in biblical times.

I found, they don't say stuff that's actually comforting to the person to whom they're "pontificating".  they're comforting themselves that it won't happen to them.

 

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oh yeah - and kids with special needs, require more supervision and support from parents.  that is NOT "hovering".

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A lot of autistic adults feel that their autism is a part of their identity that they wouldn't change. So I could see someone saying that they felt that they were supposed to be autistic.

 

I don't get too hung up on predeterminism. I don't think God wanted my children to go through all the trauma they have experienced. I don't think God wanted my son to have a TBI due to abuse in his first family. But did he want my daughter to be autistic and nonverbal? Maybe she was meant to be, just like she was meant to give the best hugs and have the biggest smile. I don't know. 99% of people with Down syndrome are happy with their lives. I can't say that was a mistake.

 

I think each of my kids is infinitely valuable exactly as they are. They might need different supports. Most of our kids with special needs will live with us forever. That doesn't make their future any less worthy or valid than my kids who will start college classes early and move out on their own. It's just different. We don't all have to do the same things. People don't have to hit a certain number of goals to have a valid life. If you are feeling pressure on you and on him to perform to a certain level, I'd kick that pressure to the curb. Life will be okay even if college doesn't work out this time. 

 

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1 hour ago, Night Elf said:

My friend got onto me for lamenting my ds's autism and told me that God chose to make my son special for reasons only He knows. Am I truly not seeing this as true? I see his autism as an affliction a mess of obstacles that complicate his life. I often wish he were like his peers and able to do the things that normal peers do. I'm so worried about his present and future. I pray for him every day and try to lay my worries at the feet of Jesus but I'm having a hard time letting go of these concerns. What do others of special needs children do? What else can I do to feel good about my ds's life and how can I help him without being the hovering parent? He's 22 and just started a 2-year degree at a technical college. I have doubts he'll finish based on prior experience with college. I'm just a mess of nerves where he's concerned.

To the first bolded--I like to think that having a special needs kid has opened my eyes a little bit more than they otherwise might have been to rude, self centered people who all too often open their mouths and insert a foot or two. Sometimes I try to educate, but I've also learned that it's okay to avoid them, or ignore them if avoidance isn't possible. Or in other words--I don't have to "let" them bother me. I can't control what people say or think; I can control how I react to it.

To the second--People on the spectrum are often three or four years behind their peers in at least some areas. So your DS is perhaps more like an 18-19 yo than a 22 yo. It's perfectly fine to be helping him more than parents of NT 22 yos are helping them.

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1 minute ago, beaners said:

A lot of autistic adults feel that their autism is a part of their identity that they wouldn't change. So I could see someone saying that they felt that they were supposed to be autistic.

 

 

 

I think each of my kids is infinitely valuable exactly as they are.  

 

they've also never experienced anything different.   I have one, who was diagnosed as an adult.  she would be thrilled to have that part of her "under control/gone", and has spent an awful lot of money trying to figure out how to treat it, without success so far.

I have played the 'what if?" game a lot about the abuse I experienced stemming from my covert narcissist grandmother.  I admit I have learned a lot I wouldn't give back to not have experienced it. but it was also probably made worse because I am (most likely) on the spectrum and it did a lot of damage that has caused me to seek professional care several times over the years.

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1 hour ago, Night Elf said:

My friend got onto me for lamenting my ds's autism and told me that God chose to make my son special for reasons only He knows.

It's a misuse of religion for someone to tell you you aren't allowed to grieve, and they clearly haven't read the Psalms or Ecclesiastes or Job or of all the times in the OT and NT where bad things happened and things went wrong and nice people were left their whole lives with things that were hard to deal with. 

They don't know what REALLY to say, because they haven't btdt. They're trying to make you feel better, but it doesn't work like that. They would have been better just to have shut up and said they'd pray with you.

Fwiw, *I* try to say that to myself about my ds, and *I* have a hard time with it. I can believe something is true on a theological level and still grieve and still be concerned and still not know how it's going to turn out. It's really trite to deny hard times and it's faith to say it's hard and that we're hoping and praying.

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I was talking with my friend recently about Heaven and wondering what it will be like in Heaven. Like if you're there and you really need breaks from people and there are millions of people, HOW is that going to work out?? And she's like, hello, it's a genetic defect, you won't be the same, you're going to have a glorified body. 

So I don't know, the strong points and the defects merge so much. I don't think it's healthy to think of yourself as broken, but we live in a sin-cursed world with a lot of genetic defects. I don't buy into the whole autism as the new normal, there's nothing messed up here, whatever. 

I guess people with webbed fingers and six toes and imperfect eyes and whatever else should walk around and constantly think of themselves as broken too. Clearly we don't do that. There's something healthy about accepting yourself exactly as you are and not needing it to be different to be happy. And I guess however different we are in Heaven will have to become obvious when we get there.

I hope it works out with what your ds is pursuing! It's normal to be stressed and concerned, that's for sure. You wouldn't be a mother if you weren't. :biggrin:

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I’ve gotten to the point where I can thank God for how he has worked in the lives of my kids with disabilities, and use that for his glory.  I do think there are some amazing gifts of insight and understanding my sons impart to us as a family and the world around them.  They aren’t pitiable creatures who just got dealt a crappy hand. They’re not inherently less favored by God or blessed because their bodies and brains don’t function in the way we see as best and normal.

Do I get frustrated or angry or heartbroken over some of the struggles? Of course.  That goes for my neurotypical kids as well.  But it doesn’t change the fact that this is the body and the mind and the circumstances in their life they were given to do their very best with and worship their creator with.  We are all fallen and broken to some manner or degree, that doesn’t change our intrinsic value in the scheme of eternity.  I wouldn’t call it a gift, but it is part of the composition of Us, as creations, and that isn’t inherently good or bad.  Just circumstances and tools.

 

I’m okay with that - with my kid with the milder brain issues as well as my much more strongly affected child.  It’s not a popular sentiment even in special needs circles, just an individual realization for me.

Edited by Arctic Mama
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Just from a pragmatic perspective, ASD is such a wide ranging thing that it clearly is a gift for many people - who are able to turn their focus into rewarding work and lives, who like the way it gives them a unique perspective. For others, obviously it does make the world more frustrating and puts them in a more vulnerable position in society in a whole host of ways. Presumably everyone has the right to determine for themselves whether they see this aspect if their identity as a challenge or a gift.

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Playing the other side.....

Ok, so it is a gift that God gave your son.....that doesn't mean it isn't difficult, frustrating, infuriating, debilitating, confusing.......especially in a society that wants everyone to fit in a play nice together.  

My son is ADHD. DD20 is ADD, Dyslexic and has POTS. DD12 has Autism, DMDD, Anxiety and a host of other problems.  I can see in each of them, how their own struggles have affected their life paths in both negative and positive ways. I can see how it altered my life!!!  And how each of them, affected the others.  

DD12 is known for being at the far end of difficult. I would not wish her emotional struggles on Anyone.  My son will have a normal life. DD20 has a good life, but partially because she found an amazing husband who can support her weaknesses and he draws strength from her support to excel himself.  DD12 has such complex issues that I don't know if she will be independent in the future or in prison.  Her ability to go from mild mannered to violent in the blink of an eye, makes me question her ability to live in society.  I am not over exaggerating. She is 5'9" and 250lbs. A couple of months ago she punched a teacher in the face because he wouldn't let her go into the hallway (she goes to a therapeutic day school and another student was raging in the hallway). The teacher is built like a line baker and she wasn't planning on letting him stop her.  I don't think of that behavior trait as a gift from God in current society. I do think of it as a hold over from evolution that would have made her an unstoppable warrior and hunter.

the right time and place, my daughter wouldn't be difficult, frustrating, infuriating, debilitating, confusing

She would be a phenomenal warrior woman, who is determined, tough, adaptable, aware (sensory),  fearless.....

Take my daughter out of a classroom and polite society and put her back on a field hunting wild game with a spear....and she would be unstoppable and be heralded for her strengths. 

This is what I focus on. 

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I also don't find it helpful when people say something along the lines of how I must be really something for God to have given me two kids with autism, as if it's some kind of reward.

I, too, view it as an affliction, not something to celebrate.  

Have you ever read "Welcome to Holland"?   I read it a long time ago and haven't been able to forget it.  Sometimes I really like it, and other times it just makes me jealous of parents who have children with Down Syndrome.    Like you,  I'm  having a difficult time right now,  and  Autism doesn't feel like "Holland", but more like the Black Hole of Calcutta.

https://www.ndss.org/resources/a-parents-perspective/

All I can say is that Jesus told us we would have trouble in this world and He was right.  

 

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My own experience is not cc and also not about autism, so, FWIW.

Extreme hardship often leads, eventually, to deeper insight, empathy and, ultimately, wisdom and compassion.  Those results of the experience may be perceived, ultimately, as gifts; it is, to my mind, a type of Job Comfort to push that construct onto someone else

 

Around the time my then-small son was exhibiting very marked signs of a very marked language disability, several well-wishers recommended or gave a book that was garnering a lot of publicity at the time, The Gift of Dyslexia.   It's mostly a compendium of very well known high achievers who managed to be extremely successful in fields that draw on non-traditional ways of thinking; and the author makes the argument that brains wired badly for written language are BETTER at visualizing forms, particularly three dimensional forms. That is the "gift" of the title.  

I expect a similar argument could be made about the autistic brain: it underweights certain modes of thinking that come easy to NT brains, and overweights others; and those other modes of thinking have associated strengths.  Thus the observable phenomenon of brilliant coders, or code-breakers, with underdeveloped social skills, who nonetheless manage successful careers and decent personal lives within the comfort of a small circle. We all know such people in real life. 

The book goes on to lay out a rather silver bullet, fast-results method that involved having the child physically create out of clay the shapes of the letters so as to master them, and thereafter to build common words physically and turn them around to memorize them. (Which strikes out in a very different direction than the longstanding well-researched Orton-Gillingham based phonological principles, somewhat reductively called "phonics," that most research-based reading remediation programs utilize.)

Well, first do no harm.  Give it a go. I told my son about the high achieving dyslexics (he liked that), and about the "gift" of a well-visualizing brain (he liked that too) and we spent a few pleasant afternoons making, and thereafter playing with, clay letters.

And he is, now, very much a visual and creative, out-of-the-box kind of thinker.  Who very much required YEARS of sustained O-G based remediation to be able to read at level; there are no magic silver bullets.  Who knows well he is, still, dyslexic, and -- though he exults in his own creativity -- does not consider it, at all, to be a "gift."  It is an ongoing challenge, with which he has mostly come to a sort of grudging peace along with a reasonably accurate recognition of the kinds of supporting habits and systems and people required to enable him to be productive.

 

It's okay to grieve in the face of a hard diagnosis; for many -- in my experience most -- people, it's NECESSARY to grieve before adjustment and accommodation is fully possible.

Some people may, ultimately, wrest lessons and insights and compassion and even joy, ultimately, out of a difficult diagnosis.... and even to experience such hard-won insights as a "gift."  That is on them.

For others on the outside to direct a person still in grief to re-frame the diagnosis as a gift, before the person is ready... well.  To my mind that is thin theology and even worse manners.  God told Job's comforters as much. 

 

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I haven't chimed in on the other autism thread, but I do think there is something environmental going on causing an increase in autism rates. It's a spectrum, and sure there are going to be a lot of people diagnosed as adults who are leading productive lives. But there is most definitely an increase in moderate to severe autism. Many of these children have other health problems like gastrointestinal issues. Some are self-injurious and non-verbal and will never lead independent lives. So when people try to say "autism is a gift" they are denying the actual difficulties these children and their caregivers will face throughout their lifetimes. It's not a gift. Sure, we can learn love and patience and all sorts of stuff through taking care of disabled individuals but I wouldn't call it a gift. 

I have a daughter with a chronic illness and it's taught her many things, including how to be incredibly responsible. But if I could take it away, I would in a heartbeat. It's not a gift. It's something she deals with because we live in a fallen world. I can acknowledge that without modern medicine my daughter would have died a decade ago. But I also believe that something in our modern-day environment is the cause of her disease... So.... 

As soon as we try to rationalize every disability and disease in life as a gift we stop looking for cures or causes for those things. It's okay to acknowledge that we learn specific lessons from those trials, but to call them a gift? No thanks. 

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I really struggle with this.  First of all, the whole theology of "God gave this as a gift," blah blah, is bullshit.  Crappy stuff happens.  I don't believe God causes bad things to happen.  

And...my kid is so high functioning that it's even an open question of whether or not she's on the spectrum at all.  She passes the ADOS.  She clearly meets all the criteria, and she clearly needs support.  We don't know what her future will be like.  But the take home is, I don't have the experience of raising a child with severe or even moderate autism.  I have a hard time thinking of nonverbal or severe autism where people are giving themselves or others concussions as a gift.  I don't know how to see it that way.  

But, as a parent of a probably autistic kid, I think the people I need to listen to most strongly are not the other parents of kids with autism but adults who are autistic.  And those people clearly see it as a key part of their identity.  By and large, the ones I've heard from, absolutely do not want to change it.  They issue pleas not for autism awareness but for autism acceptance and enthusiasm.  I have to take that seriously.  They see their autism as a gift.  And there are definitely gifts that it can bring:  passions and enthusiasms, pattern recognition, sensory awareness.  They say that the pain comes from a mismatch between their gifts and the world, and they seek to try to make it easier for fellow autists to live in the world through appropriate supports.  And I want to give that gift.  I want to embrace and enthuse about it the way they do.  

But, the mismatch between the gifts of autism and the realities of the world make it hard to see how it's a blessing.  I don't really know how to see it that way, but I try to, since the people who have the experience of living as autistics say it is.  I don't know.  It's ineffable.  

Edited by Terabith
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Thank you for the thoughts. I trust my friend's opinions about God as she's been an enormous influence as I've rediscovered my faith. However, I did disagree with this statement. I told her I didn't think God would purposefully make things difficult for people but then I started thinking about how God is supposed to never give us more than we can handle. In the past, my ds and I have discussed his autism and he said he doesn't see it as a problem. He likes the way he is and feels he's just different and he's okay with that. I must confess I can't really know the causes of his difficulties. They could be directly related to his autism or I could have caused them in the way I raised him. By homeschooling him and always seeking to find comfortable situations for him, I might have created his difficulties. I protected him. I let him choose how to school. I let him decide when to be social and when to withdraw.

He doesn't believe in God. His perspective is intellectual and he doesn't go on faith in anything. I think the concept of God is too big and vague for him to contemplate. So I pray for him every day. I pray for many things about his life and I tell God I've laid it in His hands and that I'm open to being His vessel to help my ds. It's all I know to do.

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Christ couldn't carry His cross alone.

Neither can we.

God gives us more than we can handle all the time, because we were never supposed to carry it alone.

The entire purpose of the works of mercy require helping others carry their too-heavy burdens so that both parties can be sanctified.

Your children are gifts by virtue of their existence.

Austism sucks and will require lots of mercy over the years, which may lead to more sanctification in many ways over those same years.

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7 hours ago, Quill said:

Well, on the one hand, I do believe one must play the hand that was dealt, but on the other, I’m not a fan of the God-has-His-reasons theology. That particular nugget of theology messed me up in the head for years after my baby girl died at birth. I wasn’t able to come to a place of acceptance of that tragic event until I got rid of the -God-has-His-reasons idea and just accepted the Crappy-Stuff-Happens philosophy, which is putting it nicely. I find it much easier to just deal with what is, instead of trying to find some reason for it. 

 

So well said.  I despise the concept that God causes bad things to happen.  We live in a messed up world but he isn’t going around saying,’oh I think Quill could handle a baby dying or Night Elf an autistic  child’. Just ugh.  Time and unforeseen occurrences befall us all.  Some are more difficult to get through than others.  

I think all parents struggle when life is difficult for their kids.  

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Beth, the late blooming Aspie thing is real and none of us grow up faster by being dumped in the deep end. Of course, on the other hand, it's not unusual for us to be oddly mature in some ways despite the ways we oddly aren't. Maybe some things you did over protected your son, or maybe you did those things because you hadn't a single, realistic other option. Probably a mixture, because that's how parenting is without a scientifically proven crystal ball. 

I consider autism an inconvenience. The same brain wiring that makes me an irritating pain in the backside also makes me very useful and rather fabulous. It all depends on the setting. And I suppose that's much the way life is for everyone, autistic or not. Neurotypical people certainly have their challenges and oddities too, and require mercy.

Nice post, @Terabith

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On 4/14/2019 at 10:16 AM, Terabith said:

I really struggle with this.  First of all, the whole theology of "God gave this as a gift," blah blah, is bullshit.  Crappy stuff happens.  I don't believe God causes bad things to happen.  

And...my kid is so high functioning that it's even an open question of whether or not she's on the spectrum at all.  She passes the ADOS.  She clearly meets all the criteria, and she clearly needs support.  We don't know what her future will be like.  But the take home is, I don't have the experience of raising a child with severe or even moderate autism.  I have a hard time thinking of nonverbal or severe autism where people are giving themselves or others concussions as a gift.  I don't know how to see it that way.  

But, as a parent of a probably autistic kid, I think the people I need to listen to most strongly are not the other parents of kids with autism but adults who are autistic.  And those people clearly see it as a key part of their identity.  By and large, the ones I've heard from, absolutely do not want to change it.  They issue pleas not for autism awareness but for autism acceptance and enthusiasm.  I have to take that seriously.  They see their autism as a gift.  And there are definitely gifts that it can bring:  passions and enthusiasms, pattern recognition, sensory awareness.  They say that the pain comes from a mismatch between their gifts and the world, and they seek to try to make it easier for fellow autists to live in the world through appropriate supports.  And I want to give that gift.  I want to embrace and enthuse about it the way they do.  

But, the mismatch between the gifts of autism and the realities of the world make it hard to see how it's a blessing.  I don't really know how to see it that way, but I try to, since the people who have the experience of living as autistics say it is.  I don't know.  It's ineffable.  

Not disagreeing with you, just continuing the conversation. 

I want to embrace this philosophy too, but I struggle with it. I cared for a few autistic men in the 90s. I was 20ish and worked in a group home. One of the men was nonverbal and was severely autistic. He was in the group home because he pushed his caretaker hard enough that she fell thru the glass of a double pane, sliding glass door. He was violent and showed no remorse. I am sure he didn't have a problem with his autism, because he didn't know any different.  Another would bite a chunk out of the arm of anyone who pissed him off and got too close. Even waiting till nighttime when people were asleep in their bedrooms, to attack them. Again, he showed no remorse, so did he feel he did anything wrong? 

Then, there is my daughter. Granted she has multiple diagnosis, but most of her struggles due to her lack of social understanding. You only notice there is something different about her, if you spend a few hours with her. She is verbal and likes people. She even loves novelty and a change of routine invigorates her. Change in routine also disregulates her and makes her lash out in unexpected ways. 2 weeks ago, she used her teeth to peel paint off a door frame at school. It was testing week and while she enjoyed the testing, it changes the class schedule...so she reacts in odd ways.  Week two of testing, she was trying to chew on her desk, a wall mounted white board and text books.  (OT offered her appropriate chewies  but that wasn't what she wanted). Today she kept addressing a substitute teacher as 'old lady" and telling her that she 'was stinky". DD's main teacher was in the room (sub was for a paraeducator) and said she was neither old or stinky.  DD was just doing it to get a rise out of the sub, as dd always does. She has stabbed people in the hands with pencils, ripped out chunks of hair, bit, kicked, punched etc. She has hurt teachers bad enough that they were off work for a few days. She broke my nose.  

Like you mentioned, it is the mismatch between the world and the autistic person that causes the difficulty. But to my daughter, she see's absolutely nothing wrong with chewing paint off a door frame or calling a substitute teacher names.  When we bring up her behaviors, she either refuses to talk about them, or blames it on the victim's actions.  I wouldn't say her Autism is a gift in current society.  If she never needed to go to school and could live as a nomad, she would likely seem fairly normal. LOL, But alas.....

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i'm not going to weigh in on the specific topic but if this is your boss at work:

I'd completely shut down any and all conversations about religion, spirituality, my child's differing abilities, etc.

IMO, those topics are much too personal for a work relationship, especially if YOU are the subordinate. I'd not be giving a boss so much knowledge about my personal, emotional and spiritual life. I'd also not do it if you were the boss, either, but I think I remember a thread that mentions your boss is giving you spiritual/religious advice.

JMHO

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I’m not religious, so there’s that.  But, for my particular ASD kid, there have been “gifts” that I see as special, that probably do come directly from his ASD factors. I suppose I do wish he could have all those great things without the difficulties, but that would be like wishing I could have had him without his obnoxious father. 😉 

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Romans 8:28 doesn't say that bad things don't happen or that every terrible thing is a gift.  It's a conditional promise that IF we love Him and try to work on His behalf He will turn things to work for our good.  That's totally different then saying that every terrible thing is good. It's meant to be comforting, but it doesn't even state we will ever (at least in this life) understand HOW something is worked for our good. 

There is nothing good about neurological damage that harms human connection. At some point in the far off future you might see that the damage produced some good.  Perhaps it helps to teach those around him something about patience or unconditional love or faith, as many illnesses do.  That is not at all the same thing as saying it is good.

It's very tempting to put those around us whose faith we admire on a pedestal because we would like to be more like them.  But they are still human and they still get things wrong.  I think in this case this is an example of your friend getting something wrong.

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Autism has given me great gifts, and great challenges.  It isn’t a part of me that I could wish away, it *is* me, all the good parts and the bad.  And I like being me. 

I’m frankly offended by the idea that I can’t decide for myself that my Autism is a positive thing for me, because I haven’t experienced anything else.  That’s just terribly rude.  How can you assume your experience is superior to mine, when you haven’t experienced anything else?  

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13 minutes ago, Lawyer&Mom said:

Autism has given me great gifts, and great challenges.  It isn’t a part of me that I could wish away, it *is* me, all the good parts and the bad.  And I like being me. 

I’m frankly offended by the idea that I can’t decide for myself that my Autism is a positive thing for me, because I haven’t experienced anything else.  That’s just terribly rude.  How can you assume your experience is superior to mine, when you haven’t experienced anything else?  

 

I appreciate this post very much.  Thank you!  

I am not neurotypical and while I shy away from self dx, I have plenty of things about my past and present that point to ASD as being more than likely an accurate appraisal of my host of traits and challenges and deficits.  After a lot of consideration, I am actually going in to start a full evaluation for myself this Friday.  I have two sons who are also both on the spectrum.  It does seem to run in my (geographically dispersed) extended family.  Maybe the evaluation will conclude that I don’t have it but several medical professions have suggested it or thought it was likely at this point.  I had a severe speech delay and did 10+ years of speech therapy as a kid.  Now I think they would have looked at more than just the speech needs.  

While I tend to embrace a neurodiversity model, I also am very aware of the real challenges people will all levels of support needs face trying to navigate the world as an autistic person.  

Autism is neither good or bad for me.  It’s a mix of things that can be positive or negative, just like a lot of other things.  

My autistic sons are gifts the same way I would consider any child to be a gift.  In meeting them where they are at and working to help them determine their own goals and dreams, I think I learned to show myself some of the same understanding, which has led to a far greater degree of self acceptance and self love than I was able to achieve when I was only focused on the challenges and deficits I juggled in my life.  Accommodating some of my sensory issues for instance translated to a large reduction in anxiety and stress levels.  

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On 4/14/2019 at 6:01 AM, Night Elf said:

My friend got onto me for lamenting my ds's autism and told me that God chose to make my son special for reasons only He knows. Am I truly not seeing this as true? I see his autism as an affliction a mess of obstacles that complicate his life. I often wish he were like his peers and able to do the things that normal peers do. I'm so worried about his present and future. I pray for him every day and try to lay my worries at the feet of Jesus but I'm having a hard time letting go of these concerns. What do others of special needs children do? What else can I do to feel good about my ds's life and how can I help him without being the hovering parent? He's 22 and just started a 2-year degree at a technical college. I have doubts he'll finish based on prior experience with college. I'm just a mess of nerves where he's concerned.

 

You are absolutely in the middle of a really difficult part of an Autistic life.  Launching into Adulthood isn’t easy for anyone, but it requires Executive Functioning skills that an Autistic young person isn’t likely to fully have.  Like not just the challenges of how and when to study and how to turn your papers in on time and what to eat for dinner, and God knows those are hard, but the bigger questions of “Who am I and how do I fit into the World” and “What are truly are my relative strengths and weaknesses, and what is a realistic goal for myself?”  These bigger questions require a lot of perspective taking and planning and self-awareness.  This is hard and *scary* for Autistic young people and we still very much need supports, just at the same time we want more independence.  So yes, the struggle is real.

It isn’t helicoptering at this age, it’s developmentally appropriate scaffolding.

And 22 is still pretty young in Autism years.  I have a few Autistic guy friends who definitely blossomed in their mid to late twenties.  There may still be meaningful growing and maturing to come.

So, no need to praise God for the special gift of Autism.  Not ever, and especially not now.

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I used to work with kids so severely autistic they spent their days screaming and smearing poop on the walls. I doubt that, if they could talk, they'd say it's a gift. 

And the idea that it's supposed to be a gift for the rest of us, that God intentionally f*cks up random lives to teach the rest of us about compassion or whatever, is sickening. We can absolutely learn from the people around us, but a deity doing it intentionally to teach someone else about patience or or kindness? Ugh. No.

Crap happens. People are born with differences. It's a roll of the genetic dice. It works out well for some people and not so great for others.

Edited by Mergath
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On 4/14/2019 at 10:02 AM, PeterPan said:

I was talking with my friend recently about Heaven and wondering what it will be like in Heaven. Like if you're there and you really need breaks from people and there are millions of people, HOW is that going to work out?? And she's like, hello, it's a genetic defect, you won't be the same, you're going to have a glorified body. 

 

I am somewhat amused at the notion that needing a break from people is a genetic defect. 

12 hours ago, Lawyer&Mom said:

And 22 is still pretty young in Autism years.  I have a few Autistic guy friends who definitely blossomed in their mid to late twenties.  There may still be meaningful growing and maturing to come.

 

22 is pretty young, period. I know lots of people who were adrift (or worse) in their early 20s, basically seeming to 'not grow up' until their late 20s. I don't consider that unusual for NT people at all. 

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13 hours ago, Lawyer&Mom said:

Autism has given me great gifts, and great challenges.  It isn’t a part of me that I could wish away, it *is* me 

 

I really like this. In my other post, I mentioned my amusement that needing a break from people could be considered a genetic defect that is 'cured' in heaven. I'm not autistic, but I still feel that being changed in that way would result in me no longer being me. 

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14 hours ago, Mergath said:

I used to work with kids so severely autistic they spent their days screaming and smearing poop on the walls. I doubt that, if they could talk, they'd say it's a gift. 

 

I think that's what my kid would have been like if I'd let "the system" have their way. 

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